In a flare and scared.

I haven't had a flare since '08( 2 wonderful years with perfectly normal BMs and no blood) and now all of a sudden I'm in one really bad. Now 2 days ago the pain just comes flooding in with massive pain in my legs. There's much blood and much pain now. To explain a little more I've been taking sulfasalazine twice a day with 3 pills in the morning and 3 at night. I take a 1,000mg Canasa at night when I saw blood. Well one particular week early in May I kept forgetting to take my sulfa in the morning for about 5 days straight. I would take the evening pills for sure, but for some reason could not remember to take the morning dose. I finally started to remember, but by then there was more blood. I kept taking the Canasa, but I think it was too late. I made myself an appt to see my GI and on June 7th I saw him. I didn't have any pain, but I had blood in my stool then with no real urgency to use the bathroom. Well my period showed this Sunday morning and since then I've had lots of pain and no energy. There is some major cramping in my lower abdomen that is more related to the UC then it is with my period and the leg pain as well. I called the doctor's office and he faxed an RX for Prednisone to the pharmacy. I'm scared to death to take it after all the horror stories. What should I do? I don't want to be in this flare all summer again, but I also don't want the side effects of a steroid.

Oh man I forgot to say that I've been taking 6 sulfa pills 2x daily now since the 7th. That seemed to work for a couple of days to stop the bleeding then just fell back apart. I'm still taking the 6 2x daily.

about 6 right now. For about a year it was twice daily. One in the morning and one at night and that was clockwork. Now they're more urgent as everything hits what must be a horribly inflamed rectum, but I think it's gone a little into the bowel. The cramping is horrible and it makes my legs hurt.

I'd be more afraid of the UC then the prednisone. I sometimes feel the prednisone fear factor is alittle overblown. Sure if you have a reaction to it, or on mega doses for a long time it presents problems. There are plenty people who take it then taper off w/o major problems. You might ask your Dr about Cortenemas...

Rod

The doc should have prescribed you retention enemas, and frankly, I'd be offended if the doc skipped that medication and went to pred.

Call the office, ask for the enemas...either mesalamine or steroid (I'd say the mesalamine initially).

Sheesh....why the pred first? doesn't sound like a horrific flare to me.

My opinion....you haven't done the enemas yet, which I don't get.

q

I agree with the others. I was flaring badly and even a low dose of prednisone didn't help (20mg) but then the dr prescribed the entocort enemas and they sent me into remission after only 2 weeks of being on them. I took asacol tablets, 1 asacol suppository in the daytime and the cortisone tablets in conjunction with the enemas. Get well soon.

I'd hold off on the prednisone.  Doctors are too quick to prescribe that stuff.  It's also likely to have you feeling better rather quickly, so you can always experiment with other treatments and not waste the whole summer.

I'd space the sulfasalazine apart during the day.  Did your doc prescibe 12 pills a day?  That's a pretty big dose, especially six pills a pop, and likely to contribute to feeling unwell.  A pretty standard flare dose is two pills (1,000 mg) four times a day.  I'd suppose even three pills four times a day is more effective than six at a time.

Quincy's advice on rectal meds is the gold standard.  Give it consideration.

 

Thanks everyone for the replies. I have much to consider, but I'm going to have to agree with quincy in that I think he's skipping a step. If it weren't for quincy, I wouldn't even be on the Canasa. I had to ask for it. Once I started it I went into remission for a year. I think it took a month or so of being on it, but I was in such a horrible flare that it took a while.

Originally I was on 2 pills 3x daily then was upped to 3 pills 3x daily, but I could never remember the dose in the middle of the day so he started having me take them twice a day. After being on here I did read that spacing them apart was better so I tweaked my dosages all on my own and have been all over the place with how often and how many. I did what worked *for me*. Eventually 4 pills twice daily is what worked for me and put me into remission for a year and I just stuck with that and all the while wondering if I could go down to even less, but afraid to mess with them. Now he upped me to 6 pills twice daily and that started to help for the 2 days then things got worse.

Yesterday after I logged off the computer I went and used a Canasa around noon. Between 3pm and 9pm I felt great. I drank nothing but water all day and stayed away from anything with sugar or simple sugars. I took a Max Acidopholis pill in the morning too. I felt a little off after 9, but that's only because lunch was catching up with me. I really didn't feel that bad either and there was less blood then. I took another Canasa before bed. This morning I felt great. I had less urgency and there was less blood. Currently I'm feeling "ok" and will take another Canasa here soon. So I've prescribed myself twice daily and this is working for me. I will stop taking the morning dose when I notice less urgency. I've done this once before to much shock to my doctor, but then he agreed that if it worked for me then it was ok, but to taper it off when I noticed results.

I haven't even gone to the pharmacy to get the Prednisone yet. I called my mom yesterday remembering she used it once and asked her about her side effects. She told me that it was fine until her psoriasis got really bad so she just stopped taking it with no side effects. I asked her about weight gain and she told me, "When you get hungry just reach for vegetables instead" and "to put down the ho-hos!". LOL! I love my mother.

Also I have noticed that the yeast infection I had in my naval before I started taking sulfasalazine a few years ago is back in my naval. That same morning it showed up is when the pain started. I say this is no coincidence. I think there's a correlation.

You definitely have to use enough rectal meds for them to actually treat the area....and two Canasa is better than one. I don't usually suggest them for treatment, but they're better than nothing. They can be used thrice daily....but the enemas would be better, more med, reach higher, retained longer...blah, blah, blah. The supps can be used as coffee suggested...as supplementing the enemas during the day.

Eating nothing won't actually help anything, but for a day should be the limit.

Call the doctor and request the enemas, tell him you want to exhaust the mesalamine route before resorting to pred and actually feel better knowing you have some control of when to use them, or something like that.
And I'll just add this....OK, pred may work once, twice...you still have UC forever. Ignorance has been bliss, and some see the constant use (increase/decrease) of 5ASA as a failure.....but at least it's something I can do for myself rather than rely on the doctor every time I flare.

q

quincy said...

erinkate23 said...

Take the prednisone but don't stay on it too long. It works wonders and the side effects aren't too bad if you don't stay on it too long.

Prednisone once kicked a flare into remission for me in less than a week.

Like that would ever happen [img]/community/emoticons/nono.gif[/img] not from what I've read of others' experiences.... [img]/community/emoticons/rolleyes.gif[/img]

That is what happened to me the first 5-6 years of flares (5-asa pills/enemas or cortisone enemas never worked). Had perhaps 12ish total and I went from 20-30 bowel movements (always blood) a day to a couple of movements a day with no blood in around 4-5 days. The first time I took it it was insane, then it was 2 days or something until formed stool. I've always started at 40mg and tapered 5 every week without major side effects (acne and hunger only). When the taper started I was usually in remission.

These latest years I've sadly become more resistant and not cleared up all the inflammation as fast.

about the prednisone: if you have good insurance for Rx you could ask for Entocort instead of pred.
It's expensive but less damaging because it targets the colon and not body-wide.
My only side effects were bruising. I felt like Superwoman while on it, it stopped bleeding and subdued other symptoms.
I never achieved remission as you did previously, Entocort was just a brief interlude but perhaps it could put you back on track.